I have been doing generally well apart from some blips, an dhave now been advised for medical and personal reasons to start coming off Pizotifen. Have been on it for 9 months at 1mg.
I have reduced dose by half to 0.5 and WOW - such significant symptoms flaring - foggy brained, dettched, tired, unbalanced, stomach issues.
I would love to hear from anyone who has come off or reduced their doseage of pizotifen and to hear if you had similar issues⌠I spoke to GP but he wasnt much help really and theres barely anything online - I did see a post a while back on here bt there werent really any answers
Hey Ho, well the PIL states that your doctor will instruct you with withdrawal. Chuckled at that one because if developing MAV has taught me one thing itâs that most GPs have no clue about prevention treatment at all! Absolutely zilch. I confirmed this yet again only today when I quizzed another one I had never met before at my own surgery whilst on the phone re another issue. She hadnât even heard of Pizotifen and told me as far as she knew take either Amitriptyline or Sodium Valproate as they were the only options. Looked and thereâs not much on here. On the internet generally itâs mentioned in headlines multiple times but once you get into the main text no mention of withdrawal appears.
I know I did read somewhere ages ago that some medics donât use it specifically because of the prospect of weight gain and withdrawal being acknowledged to be difficult. Recently there have been couple on here who were on it very short term who seemed to get off no problems to move on to another drug. Long term I suspect is much different. @Janb had great success with it over 18 months maybe and then came off very very slowly and was fine. Should be in her PD.
Has the doctor not suggested you start a replacement first. Obviously the Pizotifen was working masking your underlying symptoms and as you decrease they are beginning to surface again. What alternative survival techniques have been suggested. In some countries you would be offered benzos or similar to âhelpâ you through the withdrawal process but in others, UK included, thatâs more than unlikely.
Hi Becs, sorry to hear Pizotifen didnât work for you. I had been following your posts as I am also on it. Iâm up to 1.5mg and although Iâve improved a great deal Iâm having a particularly yukky day with the dizzyâs. Did you find it helped with dizziness?
I would suggest leaving it another day or two and see if things improve. Are you planning on starting on something else? My neuro said that ami is next on the list and lots of people on here say itâs good.
Hope you feel better real soon Becs. Let us know how it goes.
Bel
So personally I am not looking for a replacement. I was found to have a severe mold infection which explained all my MAV symptoms. I am looking to start a family and therefore was advised by drs to come off Pitz completely and I want to try to see how I go with regards to natural supplements to start with as I have been treating the route cause. It was more I was hoping that these withdrawals are just that, as opposed to MAV reappaearing. I have only gone down to 0.5 so I guess the option is to go back to 1.0 mg. Just rather wouldnt really. I have some emergency benzos (Clonazepam) which make me rather flatlined, but also joyful - haha!
@Belindy - it absolutely worked for me, I think it was really successfulâŚhowever it is for other reasons I want to come off (see above). I had off days as well with it, but realised they coincided with increased histamine intake the day before.
Thatâs good to hear that it was successful. And starting a family is exciting. I would just keep at .5 in that case - donât go back up. Wait until you think youâre ready to quit it altogether. If it turns out to be MAV (good lord letâs hope not) the you could always go back on it.
Piz helped around 30% (although couldve been more, as these things take ages to settle in properly) and then I added an anti histamine (which actually I shouldnt have really done, as Piz is a weak one alread, but hey ho) and that took me back to being 60%. The last 30% was a combination of protocol from mold poisoning and infa red saunas to get my body rid of the toxins. I generally would get the odd spin and vertigo but actually it was mostly when I ate badly / sugar/ moldy foods that I saw a big increase in symptoms so even though I didnt totally get rid of them all the time, i was in control of what caused my issues which in itself was enough.
I strongly believe my issues were caused by mold poisoning as I had tests and it was incredibly high, also had an absence of regular periods and had an endo polyp which is a product of a high mold called ZearoloneâŚhowever, i digress.
I want to be able to trust my body really, I think MAV was brought on by acute poisoning as it coincided with living in a mold ridden flat, had my genome sequenced and I have a difficulty with methylation and detoxing molds, in addition to about 30000 other tests I hadâŚhaha.
Thanks for the advice, I would like to be able to stick it out, @Onandon03 it is reassuring that you read somewhere it has bad withdrawal effectsâŚI wish there was more available info and also the drs would be HONEST and say that these things happen. I myself work for NHS and see so many of my patients with stroke have severe side effects to meds however its always âoh no, the med wouldnt have caused it, its just youâ - I digress again.
Thanks for the details. Your recording that will surely help others in the future. I am not suggesting we all shoot off topic constantly but your explanation is totally relevant. Future readers may well wonder why you would want to quit so soon after some success and the explanation is there to be read. When it comes to the mould issue I have read similar elsewhere on here for sure and Irrespective of the thread title a Search would bring up your experience. All grist to the mill so to speak.
I am so pleased you seem to have found a root cause. Something you can obtain control over rather than generalities and vagaries like âhormone fluctuationsâ or âenvironmental triggersâ. So much easier if you know the exact shape of your adversary. Must admit personally I often wonder âhistamineâ and even mould myself. Which histamine foods was it most affected you?
Must admit I was surprised to find you are UK based. All those tests? In the UK? Incredible. I was convinced you were US until you mentioned the NHS. Oh yes why canât they be honest. True. When it comes to drug withdrawal personally I donât think they have any knowledge. They spell out the official line. Itâs only very recently the NHS has acknowledged difficulty of withdrawal from ADs. I read that in National Press only months ago. Too much of doctors advice is taken direct from a university text book. Think Menopause. Textbook says it lasts 12 months. Yet every working days GP see cases that contradict that statement.
When it comes to drug withdrawal I worked with drug addicts for years so I can recognise withdrawal symptoms. I once had an argument with a staff nurse in hospital when I pointed out the unconscious patient thrashing about in the bed beside her, who incidentally happened to be my mother, was experiencing drugs withdrawal. Her response was that such symptoms were just Hollywood fiction. Oh really. Turned out my mother was in withdrawal. On admission they had managed to separate her and her drug box. Effectively they had stopped her 30+ years supply of ADs dead.
Thinking in it further I am almost sure I have read that Pizotifen is actually addictive which I donât think I have ever read about any of the other common preventatives. Itâs impossible to know why you are experiencing again now. Only time may tell. I would be suspicious itâs just the reappearance of whatâs there underneath. Maybe that will settle if you can get the mould and histamine triggers sorted. I do hope so. Please let us know how you get on.
Thanks for the response. I totally understand with regards to the UK - I went private through a guy at the London Clinic of Nutrition - then looked into it more myself. Neith Nathan in the states is amazing and MCAS (mast cell activation) explaines my symptoms pretty well.
I think I will just wait it out - I feel weird, but not VM in its extreme. I read that half life means that it takes 5 days for the body to get used to its normal dose, coincidentally tomorrow is my birthday so feeling back to wellness again would be a fabulous victory. If not, then I guess its back up the Piz for me. The scare i get is that I have messed the brain chemistry now and I have read that Piz stopped working for those who came off itâŚIts a hard one to titrate very slowly due to the miniscule pill size although one piece of actually useful advice the GP gave was to disolve in water and measure that wayâŚthere have been some minor improvements today so I am hoping my badass brain will take the wheel and sort it all out - so hard to trust in the body with this thingâŚ
So with regards to my allergic reactions, I have noted the following - although mostly I am ok there are some things which I dont react well to:
coconut
spirulina ( apparently superhealthy algae is PACKED with histamines)
bananas
avocados
chocolate
excess sugar ( but I crave it and eat it a lot!)
emotional stress ( not sure thats good for anyone)
One thing i didnt quite ever stop was visual issues - I was told due to inflammation caused by mold (espeically ochratoxin A, which I was off the charts in) can annoy the optic nerves. I tried to tell my GP about it of course, but it wasnt in NICE guidelines so that doesnt exist. Dont even get me started!!!
Hope thats helpful for others, and also hope that I can come back to equilibrium. The Piz was making me feel flat and sluggish, but it helped the horrific symptoms. I shall report back.
Oh, and coffee - which is high in moldâŚhowever I can drink one called Lean Caffeine to my hearts content and no adverse reactions! In case anyone wanted to know
The bit I really like is the âany further questions ask your doctorâ bit. Or alternatively chew a brick as Granny would have said. Your jaw would get just as much exercise that way. UK doctors are useless with drugs reactions etc. Pharmacist far more use.
They will always send you to Dr if you ask them for medication for anything other than common cold or flu but I have always found them excellent if you want to tap into their chemistry knowledge and it just flies off the top of their heads unlike doctors who always have to âlook it upâ. Always thought pharmacist must be frustrating job, all that training and they spend all day sticking labels on already labelled drugs packets to implement another medicâs instructions in between selling hair colourants and travel sickness pills. It was an observant pharmacist who stopped my brother taking a contraindicated drug on top of his existing prescriptions, all prescribed by same GP. No I gotta a lot of respect for their knowledge. Doctors certainly vary but the one I spoke to yesterday âlooked upâ Pizotifen as she hadnât heard of it and told me quite categorically it was not an antihistamine. First line of the PIL states it is!
Any side effects from drugs are supposed to reverse once offending drug has cleared the system surely. So unlikely Iâd think. Piz is another one is it? Seems a lot donât work second time around. The pill size is crazy. I have a packet in the cupboard. I dust it occasionally . I read somewhere on here somebody started off by cutting them into quarters. Must have much better eyesight than me to even see those Iâd say. That size does make one wonder how they can possibly cause so much trouble but these days we are hearing all the Covid virus in the World only amounts to a couple of tablespoonfuls so perhaps we should not be too surprised. Good idea dissolving it. Obvious really providing they arenât gastro resistant I suppose. Worth remembering. You certainly done your research and now you have taken the time to write it up for others to share. Thatâs wonderful stuff Becs,
Perhaps you could come off more slowly by taking two pills each day for 6 days then 1 pill for the 7th day then the next week drop one more pill, on say day 3, then keep going that way dropping 1 extra pill a week. It will take a lot longer but help you avoid withdrawal effects. I did this when coming off Amitriptyline for headaches several years back and had no withdrawal symptoms.
So I just couldnt hack the side effects/withdrawal/MAV coming back (not sure which one it is). The body holds the trauma of MAV and I believe mine hadnt become into a stable state for long enough to be able to handle those feelings again. Feeling a bit silly now for even trying but trying not to beat myself up for it. I seemed to be able to drop from 1.5 to 1 pretty smoothly but 0.5 seems to be a bit of a big jumpâŚ
I have read that Pizotifen is safe in pregnancy, although would rather not have to do that really. One thing I realised coming off is how tired and flat it had made me, my mood lifted very quickly and now I feel a bit like Eeyore again! At least I know what to attribute it to.
Still feeling weird/off/foggy but am on day 3 of upping the meds when I was lowering for 5 so hoping things will balance out soon.
Sounds like a good plan to me. You are spot on in saying having a full blown MAV experience is traumatic and not something we forget. Iâm sure when any hint of it comes my way again Iâll panic and avoid as much as I can - like you have done!!
Good luck with everything. Be sure to let us all know how everything pans out.
I am now going through the withdrawal symptoms of Pizotifen. Iâve dropped from 1.5 to 1.0 a week ago, initially had some weird dizzy feeling but a week later now, did not sleep one bit last night due to positional vertigo and a lot of nausea - the very symptoms I started off with Oct 2020. Ahhh, Iâm going to keep going.
From reading above, I am not looking forward to dropping to .5 and think Iâll stay on this dose longer than instructed as itâs when I start back at work.
I know Jan has come off, anyone else successfully come off this?
I am still on 1.0 mg and have not withdrawn any further. I am currently suffering a bit of positional vertigo, but I think it is unrelated to the withdrawal because that was some time ago.
Sorry that your positional vertigo and nausea have come back. Hopefully they will disappear once your body got used to the new dosage.
Hi Belindy
It seems sensible to stay on 1.0 for a bit longer. Dr Surenthiran advised me to go slowly especially around a stressful period - e.g. Christmas! When you do drop down to 0.5, if it doesnât work, you can always go back up for a bit longer.
Although I am not taking Pizotifen now, I still have issues with my ears - the tinnitus and ear pressure. I find that if I have been physically active - swimming, walking , or have been in a noisy environment - it can make my ears feel off - it ramps up the tinnitus. The good thing is that I donât get dizzy anymore so I try to ignore the tinnitus as much as I can as there is nothing I can do about it. I think I am as good as it gets without taking any meds - around about 85% normal - it was about 95% when I was still taking Pizotifen.
Good luck with the reductions and definitely take it slowly.
. I read somewhere on here somebody started off by cutting them into quarters. Must have much better eyesight than me to even see those Iâd say. That size does make one wonder how they can possibly cause so much trouble but these days we are hearing all the Covid virus in the World only amounts to a couple of tablespoonfuls so perhaps we should not be too surprised. Good idea dissolving it. Obvious really providing they arenât gastro resistant I suppose. Worth remembering. You certainly done your research and now you have taken the time to write it up for others to share. Thatâs wonderful stuff Becs,